Nathan's Story

June 19th, 2014 was a life changing day for our entire family. Nathan was getting over a small cold, the same one that we all had, and I noticed a slight yellowing of his eyes. I also noticed that he looked thinner than usual and had a few bruises on his legs that weren't healing well. A quick visit to the doctor which I had thought would show me that I was overreacting turned into his first admission to the hospital and a journey that has lasted 35 days and counting. We always knew Nathan was one of a kind, with an inner joy and a smile that will warm even the coldest heart. Little did we know that he was so unique that he would perplex his huge team of doctors as they search for the right diagnosis for him. Weeks in the hospital, countless blood draws, bags and bags of platelets and a few blood transfusions too, a liver biopsy, two bone marrow biopsies, countless ultrasounds and so much more. And here we are, thankfully staying at the Ronald McDonald House for the time being rather than the hospital, tying to find the diagnosis that fits his situation best. We have ruled out so many things yet no one syndrome or disorder fits perfectly just yet and, in the meantime, we wait. Here's what we do know... 

• He has autoimmune hepatitis (not a virus, but rather inflammation of the liver) caused by a build up of CD8 T cells
• Something, likely multiple things, is consuming his platelets at a rapid pace causing him to need platelet transfusions every 24-48 hours
• Something is attacking his bone marrow and it is no longer able to produce a normal number of red and white cells or platelets
• He is otherwise extremely healthy, never sick or hospitalized and hasn't even taken Tylenol much less antibiotics in his life and, despite the above list, he still appears well if you take away the side effects of the medications he is on
• His team of doctors suspect that he has HLH (hemaphagocytic lymphohistiocytosis, try saying that three times fast) but he just barely meets the criteria for diagnosis. Doing genetic testing and another bone marrow biopsy and spinal tap tomorrow to try to seal the diagnosis. 

I decided to this little blog both as a vehicle to share out story with family and friends and also a sort of personal journal of this blip in our family story. Something that we can all look back upon when this is behind us and marvel at Nathan's strength and beautiful spirit through this difficult journey. Thanks to all who are reading, supporting and cheering us on as we help Nathan in his wish to get home soon.